Johanna (Cataholic) & Sister Jessica continue to Request Prayers for young Samantha [Archive] - Page 3

Cinder & Smoke

07-05-2005, 11:25 AM

:)

July 05, 2005 at 09:20 AM EDT

Sam had a pretty good weekend, all in all; she slept a lot!
She spiked a fever one night, but was able to bring it down by herself, w/no meds. She doesn't have pancreatitis, which is good news; they readjusted her feeding tube, and the vomiting seems to be under control.

She had dialysis yesterday (we are still waiting on results from the 24-hour collection), and her pain meds are now intermittent instead of constant; the weaning process will take several weeks.

We gave her some apple sauce over the weekend, and
she managed a few bites, but kept trying to feed me instead,
and when Daddy pretended to eat the rest, she actually laughed!

She looks great, and we are anxious to hear about rehab;
the team is making rounds now, and
I will post again later if there's any news.

Thanks,
Jessica

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*Laughing* is Good! ;)

-----------------------------------

CagneyDog

07-05-2005, 12:05 PM

Sammy is *so* cute :D

I'm glad shes doing better!!

sandragonfly

07-05-2005, 12:15 PM

posted by jessica
..and when Daddy pretended to eat the rest, she actually laughed!

awe, that's really good thing to hear. :) laughs product good cells! ;)

keep going, little sammy, I know you can do it. take care, everyone.

DJFyrewolf36

07-05-2005, 12:22 PM

Happy Fourth of July Sammy!!

I'm glad to see she is improving, lately there has been much good news!

My thoughts are always with this couragous little girl and her entire family!

sasvermont

07-05-2005, 01:11 PM

I have just finished reading all of the patient updates. What a story. Oh my gosh.

I will never complain about anything, ever again. This family has gone through so much. I will never forget this family and their precious child Samantha.

It will take me weeks to comprehend what is going on with Samantha. What a sweet, innocent child. Oh my.

This truly puts things in perspective.

Cinder & Smoke

07-06-2005, 10:54 AM

:)

Wednesday, July 06, 2005 at 11:05 AM EDT

Well, it looks like Sam is heading to rehab tomorrow;
the rehab folks came by this a.m. to give me the news.
This is such a big step for her. I've been told they work miracles in rehab, and that the staff is excellent. Send extra strength Sam's way to help her work hard so she can come home!

In other news, the GI docs seemed to think the vomiting was due to one of her tubes dipping down into the wrong area;
that has been remedied.

Her catheter has been removed, and
she's now going in her diapers again, like a regular toddler.
She's having dialysis right now, and it looks like they have a M-W-F schedule in mind; I haven't heard any news about the collection they tested, to see how well she's "clearing."

They also removed her central line, as she has less meds coming in now,
and they don't need as many ports.

So it looks like a big week for Sam!
She's been very alert this morning, and was getting very excited,
waving her arm around and blowing me kiss after kiss;
maybe she heard that she's getting out of ICU!

I'll miss the wonderful ICU people who have given her
such excellent care thus far,
but I've promised to bring Sam back for visits --
they threatened to track us down if I didn't!

Thanks,
Jessica

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Oh ~ W:DW!! :) :)

ReHab, Here We Come!!

ReHabbers note: Prepare to have your Hearts STOLEN!!

ICUers note:
Many, MANY *THANKS* to you Guys & Gals for
all you've done for Sammy!! ;)

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popcornbird

07-06-2005, 11:24 AM

I'm just thrilled to hear this news. Sammy's leaving the PICU! Yay!!! Another big step in the positive direction. :D

DJFyrewolf36

07-06-2005, 11:31 AM

Things are getting better and better for baby Sammy!!! :D My prayers are still with her!

CagneyDog

07-06-2005, 11:39 AM

Thats great!!! Stay strong Sammy!!

prechrswife

07-06-2005, 11:42 AM

It's so great to continue hearing positive news! Samantha is still in my prayers.

krazyaboutkatz

07-06-2005, 11:42 AM

This is wonderful news!!!:D I'm so thrilled for Sammy and her family and hope she continues to improve more each day.:D

Albea

07-06-2005, 11:47 AM

Sweet, beautiful Sammy, those are such great news!
Many gentle hugs going your way with best wishes for the recovery to continue so you can go home soon.

gini

07-06-2005, 11:56 AM

This good news just warms my heart. I can imagine how it must make you and your family feel.

What a precious little girl.

Barbara

07-06-2005, 02:14 PM

VERY good news. Sammy- life is getting a little more normal again:)

Karen

07-06-2005, 05:53 PM

I'll blow kisses your way, Sammy! Onward to Rehab, a new group of people to charm! :) Keep getting better and better, Sammy!

Karen

07-07-2005, 11:26 AM

From the CarePages, today at 12:06:

Of course, like the weather in Cincinnati, the plans for Sam change by the hour, too. Shortly after I posted yesterday, I learned that since they can't do dialysis on the floor in rehab, they were having difficulties scheduling Sam once she transferred: the dialysis unit has a tricky schedule, and the nurses there don't deal with trachs a lot; the other choice was to bring her back to ICU for dialysis, but that's a major headache in terms of expense for room turnover and things of that nature. (Not to mention that once Sam vacates a room, everything has to be scrubbed down/sterilized/burned/thrown away due to the infection in her stool.)Anyway...the new plan was to move her tomorrow, right after dialysis; that way, the kidney docs get a last dialysis in before the transfer--they want to then try to let her go a week w/out dialysis, and see how she does. That would all have been swell, except that her admitting rehab doc won't be in tomorrow, and--just to add another twist to the saga--she's vomiting again (puked so hard her feeding tube fell out), so now they've scheduled an upper GI for this afternoon, so they can make sure there's nothing anatomical causing this. Of course, it's better to tie up all these loose ends before the transfer, and we want a resolution as far as the vomiting. Everyone agrees she belongs in rehab, though, so it's just these few last-minute snags...arrgh...but the plan, at this minute, is to transfer her Monday morning, 9 weeks after her admission to the hospital. Other than that, she ran a fever last night, but brought it down on her own again, w/no meds. She had a nice bath this morning, and we gave her a much-needed shampoo, and then I made my best effort at braiding her hair, so she now looks like a little Swiss Miss. She's also getting quite good at brushing her teeth by herself, and really enjoys it when I "dance" w/her by moving her arms around--she was all smiles for that. Send some prayers her way for a quick fix for the GI problem, and a calm weekend in the ICU before she begins the next chapter. I'll try to post again later if I get any news today.
Thanks,
Jessica

*****

Still in our prayers, we're so glad you're getting more and more time off from dialysis, and hope that the tests show your kidneys are working as they should!

Oh, Mommy Jess, we need Swiss Miss Sammy pictures!!!!! :)

Barbara

07-07-2005, 01:52 PM

Oh how difficult that must be- one one hand Sammy being healthier and wanting to be more active, on the other hand all these "loose ends". And of course it's better safe than sorry.

So a little more patience is required (something I never have :()

popcornbird

07-07-2005, 09:40 PM

Little Sammy, you are still in my prayers. {{{hugs}}}

wolflady

07-07-2005, 11:15 PM

Originally posted by sasvermont
I have just finished reading all of the patient updates. What a story. Oh my gosh.

I will never complain about anything, ever again. This family has gone through so much. I will never forget this family and their precious child Samantha.

It will take me weeks to comprehend what is going on with Samantha. What a sweet, innocent child. Oh my.

This truly puts things in perspective.

Gosh, for me too! :( Bless her little heart! Loads of healing prayers and thoughts are on the way to dear Samantha. I can't even imagine...:(

**hugs**

gini

07-07-2005, 11:42 PM

Sammy and her family are constantly in my prayers.

Cinder & Smoke

07-08-2005, 09:25 AM

Friday, July 08, 2005 at 09:57 AM EDT

The good news is that the upper GI showed nothing;
the bad news is that she's still vomiting.

They're not sure what's causing it --
maybe the meds, maybe some reflux...who knows.

I just hope they can get it under control soon, and
that this won't change her transfer plans.

She'll have dialysis this afternoon, and
then no major plans until Monday.

I'll post again Monday, hopefully after we relocate!

Thanks,
Jessica

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Prayers Offered for an end to the Upset Tummy ...
AND a successful *Transfer* to ReHab.

GO, Sammy!!

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luvofallhorses

07-08-2005, 10:58 AM

:( More prayers on the way. {{{hugs}}}

Karen

07-11-2005, 01:09 PM

Today's update:

July 11, 2005 at 01:43 PM EDT
Well, we're still in ICU, but the latest word is that we'll move to rehab tomorrow. Sam continued to vomit over the weekend, but she's not vomiting food--only bile/secretions. She mainly vomits when coughing or having her trach suctioned; they think it's just due to a very sensitive gag reflex. They gave her a slightly different trach tube to see if that would help. They're also considering feeding her through a tube in the stomach, so she won't gag on the tube up her nose--now that she's more alert, she's trying to pull on it, and she's also moving around so much that her central line keeps coming out a little, so they will probably remove that as well, and do dialysis, when needed, through a belly catheter, if the plastics doc says the skin is healed enough. They thought the central line was infected (just the skin), but it appears that her frequent vomiting just made the area messy, and it's probably fine. One idea being tossed around is removing the trach in the near future, as the reasons for traching her no longer exist: she has no surgeries/procedures planned anytime soon, and she's off the vent. We're all for that, as she could talk again, and eating would be easier, so maybe that can happen once she's in rehab. She had dialysis today, as some of her numbers were elevated, but they may wait a while before doing it again; some tests are being done to see how much her kidneys are clearing, but no results are back yet. She starts a new formula today as well, w/less protein--a more "kidney-friendly" type, so her kidneys don't have to work as hard. They've taken away her special air mattress, and she now just has a regular big-girl bed, as her skin is no longer as vulnerable. (One of those metal crib-baby jail beds is sitting outside her room; I don't know if they're planning on using it or not.) She sat with both mom & dad over the weekend, and just a little while ago, she was sitting in her bouncy seat on the floor, playing w/mom, until she fell asleep. I also got a big smile from her earlier today, which always makes my day. Soooo....that's where we are at the moment. Plans are subject to change any minute, though, but we'll still cross our fingers for tomorrow.
Thanks,
Jessica
PS A big Happy 10th Birthday to my nephew Bud (aka Jordan)

Barbara

07-11-2005, 02:23 PM

Oh Sammy, we hope so much you can go to rehab soon and get rid of that trach. Only a little patience, sweetie. We still keep our fingers and paws crossed.

popcornbird

07-11-2005, 03:10 PM

Still praying for you, Little Sammy!

{{{Hugs}}}

luvofallhorses

07-11-2005, 03:12 PM

You are still in my prayers, Sammy. {{{{hugs}}}} Stay strong!

Cataholic

07-12-2005, 10:38 AM

July 12, 2005 at 11:17 AM EDT
The plan is still to move us to rehab today--probably early this afternoon. Sam was very active this morning, and enjoyed a cherry lollipop during therapy today. She's also had OT & PT, and is pretty wiped out. She seems to be vomiting less. She can now roll over completely, so we really have to watch her in the bed! I'm amazed at her strength, considering how long she's been in bed and how much medication she's still on. In a few weeks, she should be off her meds, and getting into all kinds of trouble. I'll try to post again after our move.
Thanks,
Jessica

popcornbird

07-12-2005, 11:39 AM

Yippee!!! Good luck Little Sammy!

DJFyrewolf36

07-13-2005, 01:34 PM

Keep on truckin' Sammy!! :D So far, it seems like things are looking up!

Cataholic

07-13-2005, 02:10 PM

It was a close call this morning (Wednesday), and Sam nearly was returned to the PICU. She had an awful night of vomiting and fever, and my sister said she looked awful this am. My sister was pretty discouraged about the change in Sam.

I talked to her several hours later and the attending said Sam could stay in rehab as long as she didn't get worse, and they would 'assign' a nurse to her for more frequent checks.

I just called the room, and no one answered. That doesn't necessarilyl mean something bad, but, it always makes me uneasy.

:(

finn's mom

07-13-2005, 02:11 PM

I'm thinking of all of you.....I'm sorry that there has to be such hardship in people's lives sometimes.

sasvermont

07-13-2005, 03:03 PM

I surely hope she gets back on the good side of this problem. I wonder why some people have to struggle so with life and others float by. Doesn't quite seem fair, does it.

One would think that this little girl and her family have been through enough now and that the tide should turn.

I think about Sammy so much these days. It took me months to notice this thread. Such a heavy duty thread.

Bless your sweet soul Sammy.

luvofallhorses

07-13-2005, 03:10 PM

Sammy and your family are still in my prayers (((hugs)))

popcornbird

07-13-2005, 04:46 PM

Dear Johanna,

I'm so sorry to hear Sammy had a bad night. :( Poor baby! Sending prayers that everything turns out well, and that she feels better soon.

{{{hugs}}} to you and your family. I can't imagine how difficult this time is for you. :(

Cinder & Smoke

07-14-2005, 12:27 AM

.
Wednesday, July 13, 2005 at 04:32 PM EDT

Well, we're trying to get settled in rehab;
the staff is very nice, as is the room.

Sam had a rough night--vomiting and fever.
She looked pretty bad this morning, and I was sure we were heading back to ICU, but her rehab doc said the first night is often rough, and that they can handle these things in rehab. They'll run more tests re: the vomiting, but those usually turn up nothing, so I don't know how that will resolve. She has some diarrhea again, too ... not a fun time for Sam.

She's basically been sleeping all day;
she managed some PT early this a.m., but that's it.
She's in the dialysis clinic right now, about halfway through her treatment, then she'll go back to rehab. Her kidneys are clearing some, but not enough yet to stop dialysis.

Seeing her sick again is discouraging, but these setbacks are expected along the way. We will have a meeting Monday afternoon w/the rehab team to discuss Sam's plan, daily schedule, expected inpatient stay, goals, etc.

One thing Sam did do today was put her right index finger up on her mouth; some of you know that Sam's finger was in her mouth whenever she was upset, stressed or tired, and she sucked on it all night in her sleep -- I guess that old habit is kicking back in now that she's becoming more alert. I'm glad to see her trying to comfort herself in her usual way.

Send some extra prayers Sam's way to help her get through this transition.

Thanks,
Jessica

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Prayers Sent -
Hopefully Sammy will "settle in" to the New Room and Activities.

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Barbara

07-14-2005, 05:46 AM

*deep sigh*

We just cannot imagine what you are going through, Sam, Jessica and family.

Being here and trying to reach over a virtual hand already goes so deep.

I know about these setbacks in any process- so I'll never think it's over till' it's over.

Karen

07-14-2005, 07:41 AM

Being in rehab is a step - yet another - in the right direction, and even though the transition wasn't as smooth as you might have hoped, at least they sound like good people and knowledgable as well.

Hugs to you and to Sammy, too!

Albea

07-14-2005, 09:47 AM

Sammy, many good thoughts and prayers continue to go to you, sweet little girl. Also to your mommy and daddy.

gini

07-14-2005, 10:28 AM

Even with the fun of a BBQ going on, Sammy, we will not forget you even for a minute.

My heartfelt prayers are going out to you sweet little girl, and to your Mom and Dad.

cyber-sibes

07-14-2005, 04:59 PM

Lots and lots of prayers going out for little Samantha, poor baby. :( And for her loving family as well.

Cinder & Smoke

07-14-2005, 05:03 PM

:)

Thursday, July 14, 2005 at 04:45 PM EDT

Sam had a better night last night,
and hasn't vomited since early this morning.
She did very well w/her therapies today, and was quite tired--she napped nearly 3 hours!! She was very enthusiastic about brushing her teeth. While she napped, she moved around a lot, and actually slept on her side for a while; it's nice to see her sleeping in normal positions, instead of the standard flat-on-her-back hospital pose.

Tomorrow she has 2 procedures --
a new central line will be put in (in her arm this time), and
they will remove the existing one(by her neck -- a very scary-looking one, as it's always pulling out), as they think it's a problem insofar as infections. Some kind of germ is showing up again in tests, and they definitely don't want that spreading. She's been back on a couple antibiotics the last day or 2, so they're quite anxious to get that old line out, too, as they think it might be the culprit.

In the afternoon, a new catheter for dialysis will be put in, too, and should make dialysis easier. Of course, the nephrologists are hoping she won't need that for too long.

Sam's working on sitting up :) ; I took a couple pics of her in therapy today, and one of her dancing with her daddy, so I will try and have those posted soon.

Send prayers for Sam's big day tomorrow; hopefully some of her other issues will resolve themselves when they get these lines "cleaned up."

Thanks,
Jessica

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Sounds like *Progress* on all fronts!
Good Luk with the Sir Juries tomorrow!

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DJFyrewolf36

07-14-2005, 05:17 PM

Good luck Sammy with those sir juries tomorow! Glad you had a better day today :D

I find that I can't keep myself away from this thread. Its wierd (in a good way!) that I care so much about a little girl and her family that I don't know in person. One of these days, I would absolutely love to meet Sammy and her parents. I am so in awe at how strong you guys really are and at the overwhelming care that the PT folks have shown.

There is really some good in this world!

popcornbird

07-14-2005, 05:48 PM

Prayers that everything goes well for you little Sammy!!! AND, lots of hugs and kisses to you too! Stay strong, and keep getting better!

Barbara

07-15-2005, 05:06 AM

Keep my fingers crossed. This sounds like an important day:)

Cinder & Smoke

07-15-2005, 05:47 PM

:)

Friday, July 15, 2005 at 04:28 PM EDT

Another good night for Sam, and a good morning as well.
She did great in therapy today.

I brought in her favorite bag of little toys from home, and she enjoyed seeing them again, reaching out and grabbing them, etc. I brought in one of her sippy cups as well, and she reached right out and grabbed it w/both hands, stuck it in her mouth, and tried to drink -- suspecting it was empty, she pulled it back and shook it to see what was in it, just like our Sammy! She's not allowed to drink & eat freely yet, but they might give her a little drink tomorrow. She sucks on lollipops and her mouth sponge (hospital toothbrush), though. She has held on to the sippy cup all day. I hope we can put something in it soon!

She played a lot in OT, too, and is following instructions really well;
she opens her mouth, holds things in both hands, hands you something when you ask, waves bye and gives high fives. She was also making faces at me earlier, spitting out her tongue and just being playful in general. She raises her arms for us to pick her up all the time now, and it's so nice to be able to do that.

Both procedures went fine; the old central line is out, which is a good thing, as it was growing pseudomonas. She's on a couple antibiotics in the meantime. She has a new line in her arm, and a separate dialysis line in her belly.

She also had a special visit from one of her ICU docs, Leslie,
who's been involved w/Sam's care since day one.
Tomorrow she has each of her therapies once, then she has a day off Sunday, then back to her regular twice a day (each therapy) on Monday. She'll probably need lots of rest this weekend to recover from the busy week!

Thanks,
Jessica

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W:cool:W!
Seems like Friday was a *nice* finish to a Great Week!

GO, Sammy!!

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chocolatepuppy

07-15-2005, 06:55 PM

Samantha, you are still in my prayers.

prechrswife

07-15-2005, 08:28 PM

The last update sounds great! Still praying...

popcornbird

07-15-2005, 10:54 PM

Great update! :D Hopefully, next time, your sippy cup will be full!!! Prayers and hugs for you, sweet child!

Barbara

07-16-2005, 04:26 AM

Big smile here. So good to hear of Sammy's progress. :)

Cincy'sMom

07-16-2005, 10:00 AM

So glad to hear Sammy is doing so well!!!

Cinder & Smoke

07-18-2005, 12:26 PM

:(

Monday, July 18, 2005 at 12:14 PM EDT

Sam did okay for the most part over the weekend,
but still had some vomiting, and spiked a fever this morning, and
has been sluggish since then.

She enjoyed some family visits, and played a bit,
but unfortunately, they don't think she's well enough for rehab yet,
and she will be transferring to the dialysis floor (3) today,
as she's not sick enough for ICU, but just not ready for rehab.

Besides the vomiting and fevers, her heart rate is up significantly and her bp is lower than usual. Another issue is insurance; ours covers 60 days of inpatient rehab, but if she's not being rehabbed while on the floor (i.e., she's too sick for any therapies today), we "lose" those days.

They'd rather her return to a medical floor, and then come back to rehab when she can take full advantage of it. She will be under the primary care of a nephrologist, and will receive more medical attention than they can offer on rehab.

So... a major, but necessary, step back.
Please send Sam some prayers, as she's having a rough time.

Thanks,
Jessica

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Prayers Offered that the upset tummy gets better!

GO Sammy! ~
We'll stick with you, no matter What Floor you're on! ;)

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DJFyrewolf36

07-18-2005, 12:31 PM

It stinks that Sammy is taking a step backward, but I do think that the doctors on the dyalisis floor will take very good care of her! Keep trucking Sammy!! We are all praying and hoping for you!

Sammy continues to be in my prayers! I hope this rough spot passes quickly.

shais_mom

07-18-2005, 12:32 PM

Prayers on the way from California - from Zip - Kel- and I

gini

07-18-2005, 12:34 PM

Sammy, come on little one............you can do it...............a bit of a setback - now take the next giant leap forward...........we are all praying so hard for you.

krazyaboutkatz

07-18-2005, 12:41 PM

I'm so sorry to hear that Sammy is having another setback.:( Lots of prayers and positive thoughts are being sent her way.

cyber-sibes

07-18-2005, 04:22 PM

Prayers for little Sammi's family...it must get discouraging, but your courage and strength shine through!

Logan

07-18-2005, 08:11 PM

Bless her heart..........praying for good things for all of you.

Logan

luvofallhorses

07-18-2005, 08:37 PM

:( Prayers from Montana and {{hugs}}

popcornbird

07-18-2005, 09:51 PM

Sweet Sammy, :( I continue to pray for you. Hang in there. You've come a long way, and I know God will help you as your health returns to normal. Stay strong little one!!! {{{hugs}}}

Barbara

07-19-2005, 01:04 PM

I am so sorry for you- but we knew always it could happen on her long way to recovery. All the best thoughts to you:)

Cinder & Smoke

07-19-2005, 04:44 PM

;)

Tuesday, July 19, 2005 at 04:43 PM EDT

Well, as always, wait a little while and the plan will change.
We are still on the rehab floor, but not technically on rehab's "service",
which means Sam's only having therapies once a day (like during the latter part of her ICU stay), and under the primary care of a nephrologist instead of her rehab doc.

It looks like she has a UTI, which they are treating, and is not much of a surprise, considering she had a catheter for quite some time. The nephrologist thinks she can stay put -- sparing her another move, esp. a short-term one -- and they'll watch her for a few days, and then (hopefully!) be able to return her to rehab's service.

Sam had a pretty good day today, and
is officially allowed to drink from her sippy cup. :cool:
Of course, once actual liquid was put in the cup, she decided she didn't want a drink after all! That all changed when Daddy showed up, and pretended to drink from her cup, then handed it to her --
she took her first sip! :) :D
(Apparently, Mommy wasn't nearly as impressive when she tried the same stunt earlier.)

She's smiling a lot more now;
I put her sunglasses on her stuffed rhino, and that caused quite a grin.

She wasn't as sleepy today as the last few days, and we're looking for her to continue to perk up, once the infection is brought under control.
Her ICU nurse, Katie, came by to see her yesterday;
as nice as it was to see her,
we are relieved that we're not heading back there!

Sam appreciates your prayers, and she's working hard to get better.

Thanks,
Jessica

--------------------------------------------------------------------
Sammy ~

Thanks for Workin So Hard to get Better ~
We'll Keep On Prayin!

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DJFyrewolf36

07-19-2005, 05:00 PM

:D glad to see Sammy had a better day today!

Karen

07-21-2005, 10:03 AM

New update from the CarePages

67 July 21, 2005 at 10:43 AM EDT
And the plan changes yet again...we came back to the ICU late yesterday afternoon. Sam's bps were low, due to infection, and one of her ICU docs came down to take a look, and it was decided that Sam could use a closer watch until the infection was under control, and that the appropriate place right now was ICU. If all goes well--she started a new antibiotic yesterday, as the bacteria causing the UTI is resistant to the other one they tried--we will only stay 3-4 days. Her bp is fine again, and after sleeping all day yesterday, Sam was quite perky in the early evening, and played with Aunt Johanna, Mommy and Daddy. She sat up for a couple hours, danced to the Wiggles, and gave us lots of smiles. The vomiting is still an issue, and they will be checking into that again. Some good news, though, is that she hasn't had dialysis in a week, and her numbers still look good enough. We just need to clear this UTI, and get back to rehabbing. Send some good thoughts Sam's way; this is just another setback, but we'll move forward again!
Thanks,
Jessica
******

Good news on the dialysis front, that's fabulous. Sorry about the slight set-back and infection, but we hope things continue to improve for *our* Sammy! (She does know she now has hundreds of aunties and uncles and grammas, right? ;) )

Barbara

07-21-2005, 10:34 AM

Oh Sammy, am I allowed to make a bad joke and tell you that we all know the UTIs from our kitties;)

So you will have to take the antibiotics (and I hope they have the right one now) until you are finished.

But it is true that life begins to be a little more fun- like dancing and drinking out of the sippy cup and not having had dialysis in one week (which is simply great:D :D :D ).

So things WILL look up:)

luvofallhorses

07-21-2005, 01:56 PM

We're still pulling for you, Sammy!

popcornbird

07-21-2005, 02:26 PM

Awww, Sammy! You must have been so happy to have played with your mom, dad, and Auntie Johanna! Still praying for you. Wonderful news that you haven't had to have dialysis in a whole week! Stay strong, little one! Things will get better soon!

Cinder & Smoke

07-26-2005, 09:07 PM

Sorry these are late - we've been a lil busy ...

Friday, July 22, 2005 at 04:45 PM EDT

And we're on the move again...
we have left ICU and are now on a regular medical floor,
where Sam will have her rehab. The powers that be have decided that she really needs close medical attention along w/rehab, so we should finish out our stay at Children's where we're at -- hopefully!!

Sam is still on the antibiotics, and the infectious disease folks will be following her case, making sure they get rid of the bugs; nephrology will also be watching her, but she's under the "primary" care of general pediatrics.

Still no need for dialysis today, so that's encouraging.
Sam has been awake all day--same thing yesterday--and very alert. She fights her midday nap w/all her might, and wiggles around and reaches out for me when she feels herself nodding off. I guess she figures she's spent enough time sleeping these past few months. She's had some of her therapies as well.

I'm sure this latest transition will be tiring for her,
but it could be the final leg of our Children's stay,
so we have our fingers crossed!

Thanks,
Jessica

-----------------------------------

Tuesday, July 26, 2005 at 04:30 PM EDT

Sorry for the delay;
All is Well w/Sam, and she's pretty much settled into her new room.

I'd like it to be her last room here, but there's still talk about
moving her back to the rehab floor... who knows.

She still hasn't needed dialysis, so things are okay w/the kidneys right now.
They are doing further studies on them, so we'll know more soon.

The vomiting is still an issue, but it's happening a bit less. Sam is sitting up really well now, and can roll over and pull up into a sitting position on her own. She also likes to pull on her feeding tube, so we really have to watch her.

It's so nice to see her sitting up and playing w/her toys.
They are still weaning her off the meds, but on Saturday night, she experienced some withdrawal, likely from the anti-anxiety med she's been on, and she screamed so loud I could hear her, and I heard "mommy" for the first time in ages! I guess if Sam gets upset enough, she can talk over the trach. I was upset, too, and made sure the docs realized the taper was a bit too quick, and Sam got a small dose to ease her discomfort. She slept until noon on Sunday, after such a hard night. They are continuing to wean her, but keeping close watch for any signs of withdrawal; they have a protocol, but there is no exact science.

Sam's also been having fun playing in the sink, and engaging in one of her old favorite activities--washing her hands! We're seeing lots of smiles from her these days, and her personality is really coming through.

We're also working on reintroducing food & drink. They looked at her airway today, and said it's fine to start working toward removing the trach; apparently, all looks okay in that area, so hopefully we'll have Sam talking again really soon. It would be nice if she could lose the new dialysis catheter soon, too, but they will likely want to wait a few months, just in case she needs dialysis.

So, all in all, we're moving in the right direction.
I'll have some more pics posted soon.

Thanks,
Jessica

----------------------------------------------------------------------------

Sitting up, Playing with toys, *Hollerin* for Mom -
sounds like the Lil Kid is back!

Prayers for Continued Progress!!

---------------------------------------------------------------------------

captain

07-26-2005, 09:24 PM

Fantastic news.

Thanks for keeping us posted Phred!

Barbara

07-27-2005, 02:46 AM

I was looking at this thread daily and willing to think that no news is good news:)

I think it is very exciting that she didn't need dialysis for quite a time now.

I never realized that ant-anxiety drugs were also among the meds she got. Yes of course! What a good thing to do- but of course they have to sneak out of them right now.

It is still unbelievable what medicine can do these days- and now I have the impression that Sammy's steps are getting bigger:)

DJFyrewolf36

07-28-2005, 04:44 PM

I've been gone for a couple of days and am glad to see things are improving! :D hooray for Sammy!

luvofallhorses

07-28-2005, 09:03 PM

I'm glad things seem to be improving, Sammy and family you are still in my thoughts and prayers {{hugs}}

Karen

07-29-2005, 09:51 AM

0 July 29, 2005 at 09:41 AM EDT
I will likely not be able to post as much, as Sam is awake more, and I don't like to leave the room when she's awake. For some reason today, though, she's sleeping late. She's been sleepy & crabby the last couple days (not unlike her mother!); this might be a "hangover" of sorts from the scope/anesthesia, or maybe she's just wiped out from being up so much more. She's refusing to try food or drink, but they suspect it's because she has thrush, which can make the throat sore if it spreads; they tried to treat it topically, but she either refused to open her mouth, or just spit it out, so they will start treating by IV today, and hopefully wipe it out soon. We need her to eat & drink, so we can ditch that feeding tube. She will have her trach "downsized" soon, and then capped for a couple days, and if she tolerates that, it will come out. We look for that to happen within the next week; she will move to another floor for that process, where they have more trach experience. Whether she'll remain on that floor or not is anyone's guess. They tried to test kidney function, but couldn't find a vein, and the other option was to put a catheter back in for 24 hours, but she was feeling pretty lousy at the time, so I had them wait on that; I guess they'll have to do something at some point, though, to see how the kidneys are doing--she still hasn't had any dialysis. Overall, she's doing okay, and perked up later last night when Daddy brought her a new coloring book & crayons, a puzzle and a new truck. I'm hoping when she wakes up today, she's back to her happy self.
Thanks,
Jessica

That's the best reason - being with an awake and happy Sammy is way more important than posting updates!

Thrush is awful - it makes food tasteless - so that's probably why she doesn't want to eat. According to my old neighbor, it makes everything taste blander than bland, like you're eating cardboard. Bleaaagh. Sammy has my sympathy!

popcornbird

07-29-2005, 12:53 PM

Still sending lots of love, prayers, and hugs Sammy's way!

Barbara

07-29-2005, 01:17 PM

*looks up thrush in the dictionary*- oh no - that doesn't help with eating.

I think it is absolutely ok if poor Sammy has a bad day - we cannot even imagine what she's gone through and we all adults would be much worse!

gini

07-29-2005, 01:28 PM

Bless her heart - overall though, it sounds as though good progress is being made.............wanting Mom - loving Dad's gifts, no dialysis...............we will keep right on praying for Sammy!

Cinder & Smoke

08-01-2005, 11:19 AM

:)

Monday, August 01, 2005 at 11:48 AM EDT

Hello.
We've moved again, back to the B building, 5th floor,
where they deal w/trachs.
They will work on getting Sam's trach out this week,
and if all goes well, we'll return to the A building.

Sam had some sleepy/crabby days,
but was pretty perky this morning.
Aunt Johanna will be posting some new pics soon.

The vomiting is still an issue, unfortunately, but otherwise she's doing pretty well. She needs to start eating/drinking (so far, she's just sipping Sprite), get off the meds, and have a kidney plan figured out, and
then maybe we can go home. :D
The rehab dept. seems to think she can handle most of it as an outpatient, so that won't keep her in the hospital. Her kidney function is being assessed again, and maybe then they'll have some idea of just how they're doing.

That's it for now;
send prayers Sam's way for these final issues to be resolved.

Thanks,
Jessica

-------------------------------------------------------------------

Wonder if Sammy gets Frequent Flyer Miles?
Good Luck with *ditching* the Trach!!

And **GO, Kidnies**!!

Prayers Continue!

Barbara

08-01-2005, 11:22 AM

I think she is now without a dialysis for quite some time!

And it's time that trach thing is getting out. I hope that in consequence her little stomach will calm down.

It's the last miles of a marathon and we know you can do it Sammy:)

Cinder & Smoke

08-01-2005, 11:28 AM

:)

From the Hospital CarePage ...

Monday, August 01, 2005 at 12:06 PM EDT

This is Johanna,
just to let everyone know I did post some new pictures of Sam.

The difference in Sam from those early weeks in the hospital-
from the physical to the emotional- hopefully comes through in the photographs.

Even though she was a bit sleepy when I visited this morning,
I can see the "real" Sam shining through, finally.
She is sitting on her own,
has some little cars and trucks to play with,
shows her displeasure at times with the procedures (he he he),
and her smile.....so precious!

:)

Cinder & Smoke

08-01-2005, 12:12 PM

;)

HI, Pet Talkers ... Sammy here >>>

http://www.carepages.com/usr/G26254/P192605_FS.jpg

Hey ... I'ts "almost" a **SMILE** ...
I'm workin on it!! ;)

-----------------------------------

Daddy and Me ...

http://www.carepages.com/usr/G26254/P192606_FS.jpg

-------------------------------------

Nappie-Time on Daddy!

http://www.carepages.com/usr/G26254/P192607_FS.jpg

---------------------------------------

Mommy has a good lap, too!!

http://www.carepages.com/usr/G26254/P192608_FS.jpg

--------------------------------------

Photo Credits to Auntie Johanna -
Thanks, Joh!!

;)

lizbud

08-01-2005, 12:48 PM

God bless this little child and may He grant her a long and
happy life.:) Hope you're feeling a little better each & every
day Samantha.

popcornbird

08-01-2005, 01:49 PM

Little Sammy, you look sooooooooo precious in that pretty dress!!! Hugs and kisses and lots of prayers being sent your way. How wonderful to hear to words, "Then maybe we can go home" from your mommy! :D I don't think we could ever thank God enough for bringing you this far. May He ALWAYS take care of you, and bless you with a long life, full of love and happiness.

Barbara

08-01-2005, 03:28 PM

I think you are tired, little girl, but I can also see some mischief coming back- and that looks like a wonderful thing to me:)

shais_mom

08-01-2005, 09:50 PM

bless her little heart...

Cinder & Smoke

08-03-2005, 12:50 PM

:)
:)

Wednesday, August 03, 2005 at 12:58 PM EDT

Hello; I'll try to post while Sam is napping.

Her trach was downsized and capped, and should come out entirely tonight or tomorrow morning. So far she's doing well w/the transition. They are stopping her feeds for hours at a time, in the hopes that she'll begin eating by mouth; they are also stopping them before & after meds, in the hopes that will curb some of the vomiting, which is still a problem. (She often vomits after she gets her meds.)

:) Sam was officially given "out of room" privileges Monday,
w/restrictions, of course, as she's still in isolation. (We do follow some of the rules.) She's been in lots of wagon rides out to the play deck on our floor, and she's enjoying that. It was her first time outside since early May; she was wearing her sunglasses, and looked very Hollywood, according to the staff.
There are only 2 things she's interested in now: wagon rides and Sprite,
which she now drinks from a big-girl cup, as she has boycotted the sippy lid.
The thrush seems to be clearing, as she's opening her mouth again, and ate a little apple sauce today.

She's also speaking;
today she said "please" when she wanted more Sprite. (She's also crying again at full volume! Never thought I'd be happy to hear that sound.)

The plastic surgeon saw her during a wagon ride, and checked her over in the wagon, and said the skin looks great. A finger on her left hand is tightening, though, and soon she will start wearing a splint on it at night, so she doesn't lose any range of motion there.

Her meds are continuing to be tapered, and she should be off them by 8/21, if all goes according to schedule. We should move back over to the A bldg. by the weekend, after the trach is out and she's been observed a couple days.

Some not-so-good news: :(
pseudomonas is back in the stool, and
her kidney test results showed that function is pretty weak, and she's likely looking at long-term dialysis. This is disappointing, though not totally unexpected. Her kidneys took such a hard hit during this illness.

Thanks for the continued prayers,
Jessica

------------------------------------------------------------------

Wagon Rides :D
FASTER, Mommy ... Go Faster!

Glad there's some GOOD News to pass around!!

**GO*, Sammy!

---------------------------------------------------------------

Barbara

08-03-2005, 02:19 PM

Sammy- that sounds as if the good life slowly is coming back. Sprite and wagon rides.

Way to go.

popcornbird

08-03-2005, 04:44 PM

Awww, Sammy! I would love to hear you say, "Please"!!! What a polite little girl! :D Keep getting better. You are always in my prayers.

luvofallhorses

08-04-2005, 09:05 PM

Sammy and family you are always in my thoughts and prayers and I will never stop praying for you. (((hugs)))

Pawsitive Thinking

08-05-2005, 04:28 AM

Hello Sammy - you look very pretty in your pictures. Brody, Tobey, Nemo and Duncan have all asked me to send you great big "get well soon" kisses from them. Keep fighting sweetheart

Karen

08-05-2005, 12:34 PM

August 05, 2005 at 01:06 PM EDT
Sam's down for a much-needed nap after a busy morning. For the second day in a row, she's been happy, smiling and playing, and saying lots of words. She's more alert w/each passing day, and we are really seeing our Sam now, complete w/familiar expressions, antics, etc. Wagon rides continue to be a hit. The trach came out shortly after my last posting, without incident or complications, so it's been @48 hours now; we will move back to A South as soon as a room is available. Sam also sampled a tiny bit of Froot Loops and Frosted Flakes today, but liked playing with it more than eating it; however, Dad came by at lunch and tried some orange Jello w/her, and she seemed to like that. There is still some vomiting, mostly after some kind of "stimulation," like meds or coughing. In other news, they are going to redo the kidney function test, because they are questioning its accuracy; they think she produces a greater quantity than the test indicated, so we'll see what happens w/that. Let's hope for a happy, playful weekend for Sam.
Thanks,
Jessica

******

Sounds good!

Cataholic

08-05-2005, 12:37 PM

I would like to specifically ask that prayers be lifted up for restoration of Sam's kidney function! Thanks.

Johanna

K9soul

08-05-2005, 12:46 PM

Wow, I missed the pictures somehow, but I'm glad I saw them now. What a beautiful little girl, she actually looks better than I had imagined she would at this point. All I can do is to echo others, bless this little angel's heart and thank God for all the miracles he has provided for her. She is in my continued prayers, and the day she goes home with Mom and Dad will be a day of rejoicing all around :)

slick

08-05-2005, 01:09 PM

Originally posted by Cataholic
I would like to specifically ask that prayers be lifted up for restoration of Sam's kidney function! Thanks. Johanna
Although I have not posted in this thread for such a long time, know that little Sammy and the rest of the family have been in my daily prayers. Special prayers going out for the kidneys.

Thank you all for keeping this thread updated.

popcornbird

08-05-2005, 01:22 PM

Originally posted by Cataholic
I would like to specifically ask that prayers be lifted up for restoration of Sam's kidney function! Thanks.

Johanna

I will be praying for her, as always!!!! So good to hear another good update! :D Hugs to all of you.

jenluckenbach

08-05-2005, 01:44 PM

I too, have not been posting, but when I receive the updates form the care pages I always read them first. Samantha is always in my thoughts and special prayers for her kidneys will be added. Thanks for the new pictures.

krazyaboutkatz

08-05-2005, 11:09 PM

Lots of prayers and positive thoughts are still being sent Sammy's way.

Cincy'sMom

08-06-2005, 08:06 AM

So glad to hear positive updates!! Prayers still coming as she continues to get better!!

chocolatepuppy

08-06-2005, 09:01 AM

Samantha is so pretty! I still have you in my prayers sweetheart.

Barbara

08-07-2005, 05:55 AM

I am so glad to hear there is hope for these kidneys- send my best helping thoughts for them!

gini

08-07-2005, 10:08 AM

Sunday morning prayers are being offered for this beautiful little girl..................

luvofallhorses

08-07-2005, 12:57 PM

I am still praying for Sammy and family. Sammy you're such a cutie :) stay strong sweetie! (((hugs to all of you)))

Cinder & Smoke

08-08-2005, 12:20 PM

Monday, August 08, 2005 at 12:24 PM EDT

Sam continues to do pretty well, and is much more alert;
she plays and smiles a lot, and is getting back on a
regular schedule as far as sleeping, naps, etc.
Oh, and the return of the pseudomonas is no big deal;
it's just an overgrowth thing, like yeast, one of those things always present, so they won't treat it. Once Sam is completely healthy again, those things will be back in check.

We moved back to A6 South late Friday evening;
we are now in Rm. 47, and should be there for the duration.

The wagon rides continue, w/Sam always looking cool in her shades, and she had a blast visiting w/family yesterday. She's drinking a lot, and still into the orange Jello, but the vomiting continues as well...very frustrating. They tried to put the catheter in today for the kidney test, but she kept screaming and tensing up, so they'll have to try again under light sedation.

They are talking about discharge plans, and it
looks like we could be blowing this pop stand in August,
maybe within a couple weeks; she would probably go home w/her feeding tube and dialysis catheter, but having those aren't reasons to stay in the hospital, and they don't want her exposed to germs/infections any longer than necessary, so we'll see.

Thanks,
Jessica

------------------------------------------------------------------

*HOME* sounds Real Good!!

We'll start Praying for an Early Release!

Gooooo, Sammy!!

-------------------------------------------------

popcornbird

08-08-2005, 12:36 PM

Yay for Little Sammy!!!!!! :D

How wonderful to hear the words 'home'!!!

luvofallhorses

08-08-2005, 12:42 PM

Yay :) Stay strong, Sammy :) ((hugs))

Anita Cholaine

08-08-2005, 12:51 PM

I'm so glad to hear that Sammy is better...:) (((HUGS)))

Logan

08-08-2005, 01:43 PM

For some reason, I'm not getting the alerts with Samantha's updates through my email anymore, but I sure am glad that they are being posted here, so I can try to keep up!

She remains at the top of our prayer list.

Logan

Barbara

08-08-2005, 02:03 PM

Oh wouldn't it be wonderful if Sammy came home in August? We'll keep our fingers crossed for an early release:)

NoahsMommy

08-08-2005, 02:36 PM

Oh what wonderful news....I hope August is the month for her return home.

Continued prayers being sent.

krazyaboutkatz

08-08-2005, 09:21 PM

This is wonderful news!!!:D Lots of prayers and positive thoughts are still being sent Sammy's way.:)

Killearn Kitties

08-09-2005, 01:37 AM

I'll be hoping extra-hard for Sammy, that she gets home this month.

Keep getting better sweetheart!

Pawsitive Thinking

08-09-2005, 04:11 AM

Was feeling so low today but after this wonderful news I can't help but feel happy for you all - especially sweet little Sammy :D :D

ramanth

08-09-2005, 09:24 AM

Fingers crossed!! :D

popcornbird

08-09-2005, 04:11 PM

The BEST update yet!!!!!!! :D:D:D

From the CarePages:

August 09, 2005 at 04:58 PM EDT
Well, it looks like home is absolutely on the horizon--they are talking about discharging us Monday!!!!! We're in a state of disbelief, but I guess when we walk out of here with her in our arms (as Daddy has been threatening to do for weeks now), we'll know it's real! So she's ready for home; now it's just a matter of getting home ready for her! We'll know the results of the kidney function test tomorrow, I think; at this point, her numbers look good, though, so we're praying for the best. We'll have a big meeting this week w/the attending physician & various subspecialists, and hammer out some sort of discharge/outpatient game plan. For the time being, the feeding tube will stay in, until she's more eager to take things by mouth. The dialysis catheter will likely stay in, too, but her other line (for meds) will be taken out Friday. She will finish her methadone at home, and she takes that through her feeding tube. So.....it's very wonderful and scary and miraculous all at once, not unlike the day I received my beautiful baby back in December. Seems like a million years ago. I will still post updates after we leave here, as I'm sure Sam has many amazing feats in store for us! Please pray for Sam's safe homecoming and continued progress; your prayers have obviously helped tremendously!!
Thanks,
Jessica, Rob & Sam

Yay, yay, yay!!!! :D Its just WONDERFUL to hear Sammy's going home soon now! More prayers, hugs, and love being sent your way, little Sam!

DJFyrewolf36

08-09-2005, 06:55 PM

:D that update just made my day...how wonderful!!!

wolflady

08-09-2005, 07:34 PM

Great news! :D Continued prayers are on the way for Sam to go home and get well!

**hugs**

prechrswife

08-09-2005, 08:35 PM

Wonderful news!!:D

Logan

08-09-2005, 09:26 PM

This is just terrific!!!! :)

catnapper

08-09-2005, 09:37 PM

What fabulous news!!!! Continued prayers coming their way that she gets to finally go home!

krazyaboutkatz

08-10-2005, 01:14 AM

This is wonderful news!!!:D I hope that everything works out.:)

Barbara

08-10-2005, 07:43 AM

Of course we need updates when Sammy will be home!

And now for another finger cramp regarding those kidneys. They simply must work!:)

Albea

08-10-2005, 09:30 AM

Great news about beautiful Sammy!
Prayers and get well wishes will continue going to her for a complete recovery at home.

Cinder & Smoke

08-10-2005, 04:17 PM

:)

Wednesday, August 10, 2005 at 04:12 PM EDT

The word is still Monday, and the countdown has begun!

Sam continues to be her sweet self, jabbering away, singing, dancing
and making up for lost time, in general.

The word on the kidney front is no dialysis for now, but it may be necessary later; her kidney function is not normal, but she's able to skate by at this point. As she grows, though, or if she gets taxed by an illness, they might give out; we'll just have to pray they last as long as they can, and in a worst-case scenario, go the transplant route.

We need to focus on the here-and-now at this point, though, and keep positive.
It's a miracle and a blessing that she will soon be home.

Another future challenge will be getting her to eat again, and getting that feeding tube out. Hopefully, a home environment will be helpful in meeting that goal.

Today is three months to the day that Sam arrived at Children's;
we never thought we'd see the day we'd be bringing her home!

Thanks for the continued prayers!
Jessica

-------------------------------------------------------------------

Hold that elevator ... we're almost ready to leave!

:D

------------------------------------------------------------------------

popcornbird

08-10-2005, 06:28 PM

:D Its almost time to celebrate! :D Can't wait till the big day!

sasvermont

08-11-2005, 08:42 AM

Light at the end of the tunnel, at last.

Such a sweet child and such a wonderful family and such great friends.

anna_66

08-11-2005, 08:55 AM

I couldn't be more happy this morning to hear such wonderful news! We'll be counting the days:D

gini

08-11-2005, 08:56 AM

There is no place like home............and I know Sammy will thrive once she is back home.

This is the best news!

NoahsMommy

08-11-2005, 01:10 PM

WONDERFUL news!!! :)

Cinder & Smoke

08-13-2005, 02:45 PM

;)

Saturday, August 13, 2005 at 12:24 PM EDT

Sam continues to do well, though the vomiting is still an issue.

She has a demo wheelchair to practice on,
and she really likes it, and does quite well with it.

She also ate some of Dad's BBQ pork rind chips the other night --
yes, they're gross, but she actually asked for them, chewed and swallowed them, w/no coughing or vomiting. Go figure.

The care conference was fine; we discussed plans for kidney care (check-ups once a week, here), home care (nurses will come by the house to help w/the feeding tube and other stuff), and rehab (either at home or at the Eastgate satellite office). She's keeping her one access line on her arm (the one they were going to take out yesterday), so when she has weekly labs drawn for the kidneys, they don't have to poke her a million times to find a vein. The dialysis catheter will stay in, too, just in case.

It's very overwhelming and a bit frightening to think of her away from the safe hospital setting, but at the same time, we want her back home so much. Of course, w/things being subject to change, we might still be here after Monday... I've already heard the phrase "if she actually goes home Monday" tossed around a couple times by different docs, so there could very possibly be a delay. I'll try and post again Monday as soon as I know anything for sure.

Thanks,
Jessica

--------------------------------------------------------------

So now it's "Homeward Bound ... maybe?"?
:rolleyes:
Life wouldn't be nearly so much *phunn* without a lil uncertainy!
:p

Give 'em till 3:00 pm or so to "let" you go home ...
Then *GRAB* Sammy an make a run for it!!

:D

----------------------------------------------------------------

popcornbird

08-15-2005, 11:53 AM

Sammy is going HOME today!!!!!!! H-O-M-E!!!!!!! :D:D YIPPEE!!!!!! :D Gosh I have tears in my eyes...

August 15, 2005 at 10:47 AM EDT
WE ARE GOING HOME TODAY!!!!!!!!!!! It will likely be this afternoon sometime, as we tie up loose ends. Sam is happy and more active than ever, and says a big "thank you" to all of you for your love & support. I will update this page as much as possible from home. Please continue to pray for Sam through this next transition, and let's hope that home sweet home is just what she needs!
Thanks,
Jessica

momoffuzzyfaces

08-15-2005, 11:56 AM

I'm all awash in tears!!

WHAT WONDERFUL NEWS INDEED!

Prayers will continue for sweet Samantha and family!!!

Albea

08-15-2005, 12:25 PM

Those are the best news I heard in a long time!!!
Prayers and healing thoughts are still going your way, lovely Sammy.:)

sasvermont

08-15-2005, 01:21 PM

You will be in my thoughts dearest Sammy and family. Gosh, such a long road and lots of it behind you!

Bless your little soul.

chrangharris

08-15-2005, 01:52 PM

Yeah!! Praise God! What wonderful news for your family!

luvofallhorses

08-15-2005, 01:53 PM

omg! :D Praise the Lord!! What great news!!!!!!!! :D I hope she continues to do well! :) ((hugs))

CagneyDog

08-15-2005, 02:40 PM

AWESOME NEWS!!! Sammy is such a strong girl!

Vio&Juni

08-15-2005, 03:17 PM

Good news!

Good luck!

prechrswife

08-15-2005, 03:29 PM

This is such wonderful news!!:D

finn's mom

08-15-2005, 03:42 PM

I hope she's able to go home!

captain

08-15-2005, 05:06 PM

*happy tears*

Such great news!!!!!:D

Continued prayers.

chocolatepuppy

08-15-2005, 05:48 PM

I will continue to keep Samantha in my prayers. I'm so glad she finally gets to go home! :)

anna_66

08-15-2005, 10:31 PM

I seen earlier tonight on the hospital site that you all were getting to go home. Can't tell you how happy I am to hear that!
I hope all goes wonderful and little Sam recovers well.

Still in my prayers
Anna

krazyaboutkatz

08-16-2005, 01:40 AM

This is indeed wonderful news!!!:D :D :D

Pawsitive Thinking

08-16-2005, 04:03 AM

Wonderful, wonderful, wonderful news for you all!! Lots of kisses to that special little girl and all her family :D :D

lbaker

08-16-2005, 07:10 AM

We will not be forgetting this dear, blessed child. Going home is a HUGE WONDERFUL step.. but I think we all know it's a "step" and the journey is far from over. We will stay vigilant over every step of this wonderful child of yours.. nay, of all of this loving PetTalk family.

Tubby & Peanut's Mom

08-16-2005, 09:30 AM

Sammy's home??!!?! Yipeee!!! Hooray!!! Wooo hooo!!!!

I know she still has a long recovery ahead of her, but I'm sure that will all go much smoother now that she's HOME!!! :D

Barbara

08-16-2005, 01:28 PM

So are you home?

I am in tears here. I know that Sammy surviving and getting stronger is a first class miracle- but there still is the knowledge of everything she still has to go through.

But yes- we stay with you. Of course!

gini

08-16-2005, 02:34 PM

I would think that Mom and Dad will need our outpouring of support even more now.

And Sammy will continue to need our prayers.

We won't fail you - but there is "no place like home"

sandragonfly

08-16-2005, 04:43 PM

gosh...WHAT A MIRACLE!!! time for home...

it has been one of a long, long journey we went through altogether! ..especially for this little wagon princess. those pictures made me sad but this word, "home" is great!!! and touchy. :) :)

I'll pray harder for no critical setbacks at home so sammy wouldn't have to go back!! I can't believe when this thread first started along with my hospital thread at the same time and she finally is home two days ago. way to go and keep up, love!

parents, take care of yourself but I hope to hear from you sooner!!

Cinder & Smoke

08-17-2005, 12:58 PM

:)

Wednesday, August 17, 2005 at 01:35 PM EDT
This is Johanna, posting on behalf of Sam, Jessica and Rob.

First, Sam is safely at home, and seems to be settling in just fine. Jessica's computer is acting up, and I am posting JUST enough to get people through the next couple of days without worrying!! I really want Jessica to be able to tell the news, but, don't worry, it is all good news!

Second, just a reminder that there is a Benefit on Sunday, August 28, at 5:00pm at the Felicity Church of Christ in Felicity, Ohio.

It will be a dinner (Spaghetti, Salad, Roll, Desert, and Drink) Adults $10 and Children 10 and under $5. Concert by The Gospel River Boys, and a silent auction with many items to bid on. We have had so many donations from various companies and individuals. We are asking that everyone please purchase their ticket in advance so we know how much food to prepare.
Contact information- Lisa Stutz at (937)379-2133 after 6:00pm or call the Precious Resources Christian Child Care (513)876-3516 from 6:00am to 6:00pm for more information or to purchase tickets.

RUMOR HAS IT THAT SAM WILL BE IN ATTENDANCE FOR A SHORT TIME!!!

For those that cannot make it, but, would like to donate, please remember we do have a Fund established: The Samantha Chunhui Potts Benefit Fund, Union Savings Bank, 8534 East Kemper Road, Cincinnati, Ohio 45249.

/s/ Johanna

Cinder & Smoke

08-17-2005, 05:34 PM

:)

Wednesday Afternoon, August 17, 2005 at 05:39 PM EDT

Hello. We are at the library up the street, until I get the laptop up & running at home. Sam is in the kids' area w/Daddy.

The transition home was as smooth as it could be; we had loads & loads of stuff to bring in. Daddy, being mechanically inclined, had the feeding machine set up quickly. Mommy was just reclined. Just kidding; he let me mix up her formula.

Our first nursing visit went well; she was very nice.
She had an hour's drive out to the "boonies," and was greeted, after dark, by our 130-lb. rottie. (Rob was on his way to our neighbor's w/the dogs, to ensure a peaceful arrival for the nurse, but there's always "the one who got away"!) She was a brave woman, withstanding both that and our house-under-construction. She was w/us until nearly eleven, and we finally got a cranky Sam down to sleep, as she was up late.

It took a while to sort out her various and sundry meds (which are still making her vomit), but we feel like we have it all somewhat under control now. She slept well, and had a nice first day at home the next day, w/stroller rides, time in the swing w/Mom, and a heartwarming reunion w/her Cozy Coupe. Mom drove her down to the lake to look around, and later on she cruised our porch in her coupe w/Daddy, waving hi to the dogs along the way. She's had a few drinks, but no food yet -- another goal to work on.

Last night she met a new nurse, who only lives 10 minutes from us. Sam was very cute for her, all smiles, and had another good night.

Today she enjoyed a trip to Kroger's, where the pharmacist helped us make even more sense of things.

Words can't express how wonderful it is to have her home, and when we're on the road, to see her back in her car seat. (That empty car seat these past few months was so hard to take.)

Tomorrow morning we see her ped, and see the kidney doc on Friday.

We'll continue to have @4 nursing visits per week.
Let's hope the rest of the week goes well, and Sam gets a stamp of approval from the docs!

Thanks,
Jessica

-----------------------------------------------------------------

WOW! ~ Road Trips!! :D

Kroger's and now the Library ...

Quite the Lil Girl About Town!!

WELCOME HOME, Sammy!!

Corinna

08-17-2005, 06:48 PM

Yahoo Sammy!!!!!

Barbara

08-18-2005, 02:48 AM

That looks so much like a "normal" life- it must be so good for Sammy to see you relax a little. This will help her more than anything else- even with 4 nursing visits and a lot of docs to see:)

Pawsitive Thinking

08-18-2005, 08:32 AM

Sammy you are a superstar!! Well done little girl for being such a brave little fighter...... tons of love and kisses heading your way

Cinder & Smoke

08-19-2005, 12:59 PM

:)

Thursday, August 19, 2005 at 11:21 AM EDT

Sam continues to enjoy life on the outside. ;)

Yesterday she saw her ped, and we just went over general stuff re: her illness. After that, we visited the library in Felicity, and enjoyed visiting everyone there. Later on that day, Sam spent time on our swing and in her car. She also tried a little rice and a few bites of plum.

We just finished w/the kidney doc, who checked her over, and drew some labs, which I will get the results of later. She'll come back down in a week. All 3 of us will be typed/tested then, too, just in case we have to consider a transplant at some point. (If Sam should need dialysis again, they feel it's better just to go the transplant route, as dialysis is merely treatment, but transplant is more of a "cure.") We'll have to cross that road when we get there.

We'll see another home nurse later this afternoon,
then hopefully enjoy a nice weekend!

Thanks,
Jessica

----------------------------------------------------------------

Life just keeps gettin *Better & Better*!
:D

-------------------------------------------------------------------

sasvermont

08-21-2005, 08:42 AM

I am so happy to hear that things have settled down now and that repairing from the damage of little Sammy's illness is now the positive part.

I cannot believe how much love and attention this child has received and needed, as well. Jessica and her hubby and family deserve SO much credit for spending nearly all of their waking and sleeping hours with Sammy. She must have felt (and still does) so loved and secure. Such dedication. Such love. Such good people.

I have shared Sammy's story with a few folks in my office. I am about to begin asking them to send a contribution to Sam's fund at the bank.

Hugs and kisses to little Sammy. I have such respect for her friends and family. Especially her Mommy and Daddy!

You all will be in my thoughts for years to come.

SAS

Cinder & Smoke

08-21-2005, 10:47 PM

:)

Sunday, August 21, 2005 at 05:36 PM EDT

Sam had a nice weekend,
having fun at home and running errands with mom & dad.

There was no major change w/the kidneys, so we'll see the docs again next Friday, along w/a plastics follow-up. Sam has PT this week as well.

She has both her cars parked up about 2 inches from the TV,
and she enjoys sitting in her car watching the Wiggles;
it looks like a toddler drive-in.
The hospital has made a TV junkie out of her,
but we're working on weaning her!

She had a couple bites over the weekend, and will drink water, but that's it.
She seems happy, though, and we have time to work on her various issues.

Thanks,
Jessica

----------------------------------------------------------------

Can Sammy "drive" to the nearest Drive-In Movie?

:D

--------------------------------------------------------------------

Cinder & Smoke

08-23-2005, 10:16 PM

:)

Tuesday, August 23, 2005 at 06:20 PM EDT

Sam had a busy day today.
We enjoyed the beautiful weather this morning, and took another walk to the lake. She really enjoys being outside and looking around at everything, and saying "hi" over and over to the dogs, who walk alongside the stroller.

After that, she went to see all her friends at Precious Resources, and had lots of fun. Then we went to the library to see more friends, and she conked out on the way home from all the excitement. It was so nice to see her enjoying the other kids -- something she has really missed these past months -- and smiling and laughing.

Mr. C got her to try some apple slices, and Mrs. C gave her some peaches; she kept a lot of it in her mouth for a while, but we think she might have swallowed some! At least she's willing to take bites. Vomiting is still occurring, but nearly always after meds, so it's pretty predictable.

Tomorrow we have PT;
hopefully the medical environment won't upset her too much.

Thanks,
Jessica

------------------------------------------------------------

Stay HAPPIE, Sammy!! ;)

--------------------------------------------------------------

popcornbird

08-24-2005, 12:30 AM

Happy happy little Sammy. :D Good to hear things are going well!

Barbara

08-25-2005, 04:53 AM

How wonderful to have these outings. Yes, Sammy must have felt lonely in the hospital without seeing other kids. It is so good that her precious little soul can start to heal:)

finn's mom

08-25-2005, 06:43 AM

That's awesome that she gets to be around other children!

Cinder & Smoke

08-25-2005, 08:50 PM

:)

Thursday, August 25, 2005 at 06:05 PM EDT

We continue to get out & about, taking walks, running errands,
and just regular everyday stuff.

Sam's been having trouble sleeping through the night (likewise, mom & dad have been, too), but I'm sure she'll get back on a regular schedule soon.

PT was fine ; Sam will go weekly, and we will work on stretches at home, too. Tomorrow it's back to the kidney docs; hopefully we're still holding steady in that dept. Sam's been vomiting w/meds (as usual) and some w/her feeds, too; we'd sure like to get a handle on that problem.

Around 3:00 today, she said "hungy" to me --
she'd been off her feeds since 6:30 a.m., so I guess it takes that many hours for any sort of appetite to kick in -- so I broke out all her favorites to see what she'd take. She puts things in her mouth, but seems a bit gun shy at swallowing solids. She drinks things w/no problem. She's especially into sweet fruits right now, and will take bites of plums and peaches, but I find a lot of it stored in her chipmunk cheeks hours later!

Oh well; it's still progress. Let's hope she continues in that direction!

Thanks,
Jessica

-------------------------------------------------------------

"Chipmunk Cheeks"??

Mite get hungry later ...
and who knows - mite be a long winter! :p

-----------------------------------------------------------------

Cinder & Smoke

08-26-2005, 06:55 PM

:)

Friday, August 26, 2005 at 04:24 PM EDT

Sam had a busy day at Children's, getting checked over
by both the kidney docs and plastics;
no major changes w/the kidneys, though we are dropping a couple meds to see if the vomiting improves. Plastics said the skin is looking good.

Sam was very ready to say "bye" at the end of these appointments, and slept the whole way home. We're enjoying a rainy day inside, and looking forward to a good weekend.

Sam can't wait to see everyone Sunday!

Thanks,
Jessica

-----------------------------------------------------------

"Lookin Good" sounds good to hear!!

Is someone going to a *Par-Tee* on Sunday?
Have *PHUNN*, Kiddo!! ;)

-------------------------------------------------------------

Cataholic

08-26-2005, 07:32 PM

Sam is the guest of honor at a Benefit on Sunday! Phred- drive on down! It is in Felicity...I imagine that is about a 5 hour drive for you....LOL

Cinder & Smoke

08-26-2005, 10:48 PM

Originally posted by Cataholic

Sam is the guest of honor at a Benefit on Sunday!

:o

I had forgotten about the Benifit :o
Bad me! :o

You're about right on the 5 hours ... it's a bit far. :(

Hopefully there will be a BIG turnout of the more "local" folks.

Cinder & Smoke

08-29-2005, 12:23 PM

:)

Monday, August 29, 2005 at 12:54 PM EDT

Sam had a wonderful weekend, with last night being the highlight.

We attended a benefit for Sam, organized by many caring people.

Over 400 were in attendance, enjoying a nice dinner, concert and silent auction. Words can't express how touched we were by this event, and how moved we are by the generosity of so many --some of whom had never met Sam until last night.

Sam enjoyed it as well, having had a nice nap that day;
she was quite charming (in my totally unbiased opinion) and
had lots of fun. She was exhausted when we got home!

It was a very uplifting experience for us;
it helped to remind us how blessed we are,
which can be hard to remember when something devastating happens.

It was so nice to see everyone!

Thanks,
Jessica

Barbara

08-29-2005, 12:40 PM

I am so glad that not only Sam was a charming hostess but that you as well profited a little from the warm atmosphere. Of course Sammy comes first but so many people also know what her parents do for her:)

Albea

08-29-2005, 01:37 PM

It's so wonderful to read that the news about Sammy keep getting better and better every day.:)
Of course she was a charming hostess, she's getting back to being herself!
Even if the road ahead is a long one, with so many people praying for her and her family she'll make a full recovery. Best wishes...

popcornbird

08-29-2005, 03:33 PM

So wonderful to hear the benefit went well. :D Samantha is such a precious little girl. How could this sweet soul NOT touch anyone's heart? How wonderful to read her updates, and to know she's getting better and better, day by day. :D

Cinder & Smoke

09-02-2005, 08:51 PM

:D

Friday, September 02, 2005 at 07:27 PM EDT

Sam had a pretty good week;
she continues to enjoy being outdoors, taking walks, running errands with mom and dad, and playing with all her toys and books at home--of course, she enjoys a daily dose of "wiggles" as well. She sings along to many of the songs.

She has managed to eat some crackers and peaches this week,
and she is now on her feeds for 12 hours, then off for 12,
allowing for a few more hours to build an appetite. The vomiting has improved a bit, now that she's on less meds.

PT was fine; Sam was more cooperative this week,
and did the stretches she needs to do. Soon she'll rotate PT and OT, w/one per week.

Her kidney labs are still stable, even w/less medication, so that's good.

She seems to be feeling pretty well, and looks great.
I will try to have new photos posted soon.

One new development is that Sam now requests back rubs by calling out "back"--she likes us to massage her back w/eucerin cream, which she gets daily for her skin. What's funny is that she hated it when we put her cream on in the hospital, and she still doesn't like it unless you're doing her back. She often calls out for a back rub at 2 or 3 a.m.; she knows one of us will wake up!
It's nice to have something that will comfort her; it seems like she has phantom pains quite a bit, and there's no easy fix for that.

I'll close this post by saying that we bought the cutest Halloween costume for Sam today--a fuzzy little chicken suit! Yes, it's early, but it's so nice to have things like that to look forward to!

Enjoy the long weekend!

Jessica

------------------------------------------------------------------

Chicken Suit!?? :cool: ;) :D

-----------------------------------------

DJFyrewolf36

09-02-2005, 09:46 PM

I am in awe of this miricle!! :D Way to go Sammy!!

Barbara

09-04-2005, 08:04 AM

I am so glad to hear these kidneys work ok even with less medication.

Filou says he would like to share his renal food but I am not sure Sammy would want it;)

And we are even more happy to hear that there is fun in Sammy's life.:)

Cinder & Smoke

09-16-2005, 12:08 AM

:)

Friday, September 09, 2005 at 08:46 PM EDT

Sam continues to do well;
I'm really going to try to get new pics up soon!

Her kidney labs continue to be stable, so we won't go back down to Children's for 2 weeks, when we'll see the kidney docs again, as well as the plastic surgeon. If she continues to not need dialysis at this time, they'll remove the catheter early next month, when she also has a scope scheduled by ENT to have a final look at the trach site, to make sure everything healed well. (That way, she's only under anesthesia once; they try to double up on necessary procedures when they can, so as to avoid multiple surgeries.)

We're hoping her PICC line can come out in the next month or so, too, and then we'll just have that pesky feeding tube. She's lost a little weight since they cut the feeds down to 12 hours; she's eating a little more, but not near enough. They're not overly concerned, as she's still a healthy weight -- those of you that have seen her can vouch for that!! -- but of course, we don't want her to continue losing. They've suggested a shake, kind of like Ensure, but low protein, for her kidneys, but we're having trouble tracking down the one they suggested -- our pharmacist couldn't find it in the computer, so they'll have to give us another name. We can also up the feeds again, but it would be great to have her take something by mouth. She drinks a lot of water, but, alas, no calories in that. A lot of liquids she would drink -- OJ, milk -- she can't have, due to her kidney diet. So the eating thing is still a challenge, but each day she's more willing to try a little something, so we'll keep plugging away!

She continues to laugh and dance a lot, and loves to sing along with her new favorite -- Bear in the Big Blue House. Yes, the Australian guys finally have some serious competition. She's also counting a lot, and is pretty good at 1-5, and is learning some colors, too; she amazes us every day! She visited the library this week, and her friends at Precious Resources, too; it's nice for her to see people other than Mom & Dad, though Dad will be quick to tell you he's the fun one! Mom makes her do her stretches, and she hates it, but they must be done. We meet w/a rehab doc next month, at Children's, who specializes in limb deficiencies; we're hoping to begin early prosthetics training sometime this fall.

Sam's sleeping away right now, gearing up for the weekend;
hope everyone has a nice one!

Thanks,
Jessica

---------------------------------------------------------------

:) Good to hear Sammy continues to Make Progress!!

----------------------------------------------------------------------

Barbara

09-16-2005, 02:56 AM

Thank you Phred, I missed hearing from Sammy.

I am so glad she loves colours and the libraries. In my life, books is the number 1 thing to get me through bad times:) and you can't start early enough to learn what a world of wonders they contain.:)

Pawsitive Thinking

09-16-2005, 04:08 AM

So glad to hear Sammy is still improving :D

Cinder & Smoke

09-16-2005, 09:51 PM

:(

Friday, September 16, 2005 at 08:42 PM EDT

Sam had a little virus this week, causing coughing and vomiting;
we ended up taking her down to Children's ER Monday night,
as I was afraid she might be getting dehydrated.
They ran a bunch of tests -- but everything came back okay -- and
gave her fluids for a couple hours, and she's been doing better since.

She saw her ped yesterday, and that went fine.
We'll go back to Children's a week from today, and
check in w/the kidney docs and w/plastics.

She continues to be her cute little self,
and it seems like she's learning more every day.
We were able to get out and about later in the week, to pick up more books and movies from the library--she's into Barney, now, too--and visit her friends at Precious Resources.

We're hoping to enjoy nice weather this weekend, and
then I return to work Monday,
so that will be another transition for us.

Thanks for keeping Sam in your thoughts.
Jessica

-------------------------------------------------------------

Glad the *bug* went away ...
Here's Hoping for a Sunny Weekend! :D

--------------------------------------------------------------

popcornbird

09-17-2005, 09:38 PM

Awww. Sorry to hear you had a virus little Sammy! Hopefully you are feeling good now, and having a wonderful weekend! :D

Cinder & Smoke

09-17-2005, 09:55 PM

Hey "Auntie" Johanna ~

Didn't SOMEbody take some *snappies* at the Sammy Benefit?

Any chance you could find a few and POST em??

;)

Cinder & Smoke

09-20-2005, 09:02 AM

:)

Tuesday, September 20, 2005 at 09:17 AM EDT

Just a brief update -- for the first time, Sam crawled last night.

Up to this point, she hasn't shown much interest or willingness to move independently. I've tried to get her to "scoot" with me, but she just would get upset. Last night, she was sitting on the couch with Dad, and throwing a little rubber ball to me on the floor, which I would then toss back to her.

I started tossing it to the other end of the couch, to see how much reaching she'd be willing to do, and when I threw it far enough that she couldn't lean over to get it,
our girl started to move, and scooted herself right over to it!

She showed some good upper body strength, and w/Mom and Dad clapping away, she seemed quite pleased with herself, and quite tired after repeating it a few more times.

Watch out--Sam's on the move!

/s/ Proud & Happy Mom

----------------------------------------------------------

WOW! :cool:

PROGRESS!!

*GO*, Sammy!!

----------------------------------------------------------

Pawsitive Thinking

09-20-2005, 09:25 AM

Bless her little heart! Well done Sammy!!!

Cataholic

09-20-2005, 10:02 AM

Hearing this for the FIRST time right here, right now!!!

WAY TO GO, SAM! There is NO looking back now. :D :D

prechrswife

09-20-2005, 10:10 AM

Yeah, Samantha!!:D :D

shais_mom

09-20-2005, 10:56 AM

That's wonderful news!

popcornbird

09-20-2005, 01:04 PM

YAY FOR SAMMY!!!!!!! :D :D :D

NoahsMommy

09-20-2005, 01:08 PM

WONDERFUL news!! :)

Yay for Sammy!!!

Barbara

09-20-2005, 01:44 PM

Wow!!!!!!!

That's some really good news. Shows that she is ready to play and to move- the essence of being a kid (or a kit;) ):)

jenluckenbach

09-20-2005, 02:07 PM

That is such fantastic news.

sandragonfly

09-20-2005, 02:15 PM

sounds you guys had fun last sunday! oh I know how not enough you could express how you're so thankful but I (we) know you really, really appreciate us a lot!!

I'm so glad that our little trooper sammy is still around, and that she was in a chicken suit, feeling good enough to.

little sammy still continues in my thoughts & happy early halloween! :D take care hugs,

..gina & everyfurriends

AmberLee

09-20-2005, 04:53 PM

You GO, Girl!!! Snugglies to {{{Sammy!!!}}}

luvofallhorses

09-20-2005, 04:56 PM

You're such a trooper, Sammy! (((hugs)))

slick

09-20-2005, 06:40 PM

Dear Sammy,

You and your family have been in my daily prayers and it does my heart good to see such a positive reponse. So now you know how to crawl....will be there any stopping you now?? I sure hope not. Bless you sweetie...we are all pulling for your continued recovery.

**it's funny how we can all come together and love a child that we've never met**

chrangharris

09-20-2005, 06:56 PM

Yeah Sammy! Way to get moving!

Cinder & Smoke

10-01-2005, 11:45 PM

Saturday, October 01, 2005 at 07:34 AM EDTSam's last labs were okay, and she's continuing w/OT & PT.

Her skin is healed enough to begin looking into prosthetics, though we are still trying to track down her "pressure suit"; we were supposed to have it in August.

She's sleeping better at night--and so are we--and the vomiting has lessened quite a bit since her cold started clearing up. She spent a couple of half-days at her daycare, and did well; Rob must return to work eventually, so we want to get her back in the swing of things. She is still scooting and crawling, and just seems a lot stronger these days.

Sam had a wonderful time at the Brown County Fair yesterday, and LOVED the merry-go-round. We had to keep taking her on it, as she threw a fit each time it stopped.

Next week it's back to Children's for the kidney check; I'll add more then. And yes, I took some pictures at the Fair, and will try to get those and all the rest up before too long.

Thanks,
Jessica

GOOOOOO, Sammy!! ;)

Cinder & Smoke

10-08-2005, 10:05 AM

http://petoftheday.com/i/our_smilies/smile.gif

Saturday, October 08, 2005 at 05:44 AM EDT

Labs are still holding steady, and the scope went fine--a quick 20-minute procedure. Everything looks okay, and there's only a small amount of scar tissue, which shouldn't interfere w/anything. They will check again in 6 months.

Sam's kidney doc and the dietician want to try taking out the feeding tube, and seeing how Sam does; she can take some of her formula by mouth, and they think she'll get hungry enough to start eating. We start Monday; please hope for a hungry Sam!

I think it will really help when she's sitting w/her friends at daycare, seeing them eat. She did well at daycare last week, and is in w/the preschool group, as the slightly older kids can better understand what to do and not to do around her. Sam's really enjoying herself, and we are so grateful to Karen and Dave and the rest of the staff for providing such a safe and nurturing environment for her.

We are hoping that Sam can perhaps be completely "cordless" by Christmas; they will remove the PICC when she's down to getting labs only once a month, and the dialysis catheter (they would've removed it yesterday, but couldn't, due to surgeon availability) will maybe come out in a couple months. We'll be talking prosthetics soon, too, so exciting things are coming down the pike for Sam as the year winds down.

Thanks,
Jessica

-----------------------------------------------------------
"Cordless by Christmas" sounds good!
We'll ask Sandy Pawz to send some batteries! http://petoftheday.com/i/our_smilies/wink.gif

GO, SAMMY!!
------------------------------------------------------------

Karen

10-08-2005, 10:07 AM

Sounds good, still in our prayers. I agree - there's probably nothing better than see her buddies eat to make her want to do it, too!

Anita Cholaine

10-08-2005, 10:09 AM

You're still in my prayers, Sammy....

sasvermont

10-16-2005, 08:05 PM

I think of this child and her family nearly every day, several times a day. I hope she is continuing to improve and that life begins to resemble something rather ordinary for all of them. Sammy and her family ARE exceptional people!

I hope they are all fine..........

Keep up the hard work.......

Thinking of you Sammy dearest.

Love,

Camp Vermont

Cinder & Smoke

10-16-2005, 09:52 PM

http://petoftheday.com/i/our_smilies/smile.gif

Sunday, October 16, 2005 at 08:41 PM EDT

Well, the feeding tube came out Monday, and Sam is managing to eat and drink like the big girl she is. The eating was slow--bite by bite--for most of the week, but really picked up this weekend.

She went out to eat with Mom and Dad tonight, and really put away the fish and tartar sauce; Mom even managed to get most of the sauce out of her hair by the time we left. She's drinking plenty, and the doc said that was the most important thing in the beginning.

On Monday, she saw her eye doc, and he was pleased; her nystagmus (eyes rolling back and forth, common in albinism)has decreased, and her illness seems to have had no effect on her vision. She will probably get glasses next year, as they seem to help lots of kids w/albinism, but her doc said there's no rush, as toddlers either won't keep them on, or break them, and after all she's been through, he didn't want to start something new right now.

Before her appointment, she got to spend some time w/her cousin Jonah (or "Jono," as she calls him), and see Grandma. She had a great week at daycare as well.

Her plastic surgeon, who also works at Shriner's, wants us to reconsider Shriner's for her rehab; he had already spoken to them, and told us that they'd be willing to accept her back for rehab, which would mean they would coordinate therapies, prosthetics and any future surgeries. He says we would start on a "fresh page" with them, and is setting up a meeting for all of us to discuss this possibility. He feels her rehab would be best handled by those w/the most experience w/cases like Sam's, so we'll see. We have another kidney check-up Friday, so keep your fingers crossed for Sam.

Thanks,
Jessica

----------------------------------------------------------------------------

Fish 'n' Sauce looks Good on ya, Sammy!! http://petoftheday.com/i/our_smilies/biggrin.gif

---------------------------------------------------------------------------

NoahsMommy

10-16-2005, 10:04 PM

This is great news! Thanks for the uppydate, Phred. :)

Glad to see the feeding tube is out and she's enjoying eating and being with friends/family.

Go Sammy, Go!! :)

Barbara

10-17-2005, 08:25 AM

After I came back from my vacation I wondered how Sammy was and I am so glad things are going more towards a normal life. Being in daycare, going on a merry-go-round, meeting cousin Jonah and of course eating :) Like Sallyanne I think of Sammy and her family all the time.
Thanks Phred for keeping us updated :)

Logan

10-17-2005, 08:35 AM

I saw there was an update on my email this morning. What delightful news!!! :)

sasvermont

10-17-2005, 08:43 AM

Sammy, you go girl! Can't wait to see a photo of this child....ahemmmmm!

;)

ramanth

10-17-2005, 09:24 AM

Wonderful news! :D

gini

10-17-2005, 09:30 AM

This is such wonderful news about Sammy. I bet Mom loved every minute of getting the sauce out of her hair because it sounds like just the normal thing to have happen with a toddler!

Sammy - what a gift you have been for all of us and you will continue to receive my prayers.

rg_girlca

10-17-2005, 10:39 AM

This is such good news hearing that they have removed her feeding tube and she is starting to eat bit by bit. Sammy, you have come a long way little one. Keep up the good work.
Prayers on the way for a good kidney check up on friday.

popcornbird

10-17-2005, 11:47 AM

Sammy, you are SUCH a miracle child. How wonderful to hear you're getting your 'toddler life' back to normal! Wonderful news. :D

Cinder & Smoke

10-30-2005, 09:31 AM

http://petoftheday.com/i/our_smilies/smile.gif

Sunday, October 30, 2005 at 07:22 AM EST

Sam continues to do well, and is really enjoying the fall. She is having a blast in preschool w/her friends, and went on her first field trip, to the Felicity Firehouse.

She's eating up a storm, and the kidney doc was pleased w/her weight on her last visit; her labs remain stable, so we don't go back to Children's until 11-18. It looks like they can pull her remaining lines--PD catheter (belly) & PICC (arm)--soon, so we're looking forward to that. She'll be able to take a real bath again, instead of the sponge baths she hates. She is sitting on a potty seat these days, so we're working on that again, and she crawls all over. She has to take a medication for the next 9 months because her TB skin test came back positive, which simply means she was exposed in China, which is common in orphans from there. It doesn't mean she has an active case or anything, but they medicate so she won't develop it. The important thing is she's not sick or contagious.

And speaking of being exposed to things from other countries--a relative in this case, not a disease!!--Sam's Aunt Judy is home and living in the U.S. once again, and Sam got to meet her and her Italian chocolate lab! We're so glad she's home.

Sam had a Halloween party at preschool last week, and gets to go trick-or-treating for the first time tomorrow; she has a friend, Jillian, 2 doors down, so perhaps they can go together.

Thanks for continued prayers and support. Everywhere I go,
everyone I see, asks about Sam, and it means so much to us!

Jessica
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Goooooooo, SAMMY!! http://petoftheday.com/i/our_smilies/smile.gif

finn's mom

10-30-2005, 09:43 AM

Awesome, so good to hear that she's doing well! :) Happy Halloween, Sammy!

Barbara

10-30-2005, 09:44 AM

These are many good news in one post! Glad to hear your weight is ok, Sammy girl and I hope you have so much fun at Halloween together with Jessica :) :) :)

RobiLee

10-30-2005, 09:56 AM

Wonderful, wonderful news!! You amaze me, Sammy! Keep on healing, sweet girl. Have fun trick or treating.

Happy Halloween, Sammy!

Cincy'sMom

10-30-2005, 11:06 AM

Have fun trick-or-treating Sammy!!!

rg_girlca

10-30-2005, 02:12 PM

What an uplifting update. You are such a trooper Sammy and I can't wait to hear all about your first bath in such a long time instead of those sponge baths that you do not like.

Happy halloween sweetie and enjoy yourself to the fullest. :D

Logan

10-30-2005, 07:59 PM

This is just amazing!!!! :) I am so happy for all of you!!!!! :D

Happy Halloween, Sammy!!!! :)

Felix

10-30-2005, 08:31 PM

Im so glad to hear such great news.What a strong little girl she is. :D

Happy Halloween Sweetie!!

krazyaboutkatz

10-30-2005, 11:07 PM

This is wonderful news!!! :D Have fun trick or treating Sammy! :D

Pawsitive Thinking

10-31-2005, 05:55 AM

Have a fun time Sammy! So glad to hear you are doing so well

ramanth

11-01-2005, 10:32 AM

Great news! Hope you had fun trick or treating Sammy. :)

Pawsitive Thinking

11-01-2005, 10:44 AM

Can't wait to see a photo of this child....ahemmmmm!

Me too

sasvermont

11-01-2005, 12:16 PM

Oh Sammy. Such good news coming from your happy home. I surely hope the days become more fun for you and your family and that progress is never ending.

I wonder what sort of costume you had on, dear one! I think maybe an angel is what I would pick for you.

Sammy, ask your Mom and Dad to send us a photo or several! We would love to see you again!

Pet Talkers! :)

Van10

11-01-2005, 10:13 PM

I'm glad to hear that baby Samantha is much better!
(((((hugs))))) to the whole family

Cinder & Smoke

11-17-2005, 08:09 PM

Thursday, November 17, 2005 at 08:40 PM EST

Well, Sam was supposed to have her belly catheter removed today
(and possibly her PICC line, too),
but the surgeon had to cancel all procedures for today,
so we're still waiting ... hopefully it will be soon.

She continues to do well, w/stable labs, and is eating and talking up a storm,
as well as crawling and scooting all over the place.

We will go to Shriner's in Cincinnati early next month to get her pressure suit,
and her plastic surgeon at Children's will follow up w/her there;
hopefully we will be talking prosthetics soon, too.

I finally have pictures to add, so I will attempt that shortly.

Sam is looking forward to her first Thanksgiving, and
we have so much to be thankful for this year;
it's hard to believe she's been home for nearly a year!

Happy Thanksgiving to everyone!
Jessica
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Yes, a Lot to be Thankful for this year!
Thanks, God!!

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Barbara

11-18-2005, 03:01 AM

Oh Phred, thanks so much. That is so typical you- coming home from the ICU yourself and thinking of others first thing.

I missed Samantha news and am so glad she is doing fine so far. My heart is still a little heavy when I see the lots and lots of medical procedures that are in front of her but to be happy and loved within her family will give her the energy to face that- isn't it true that this kid has an amazing energy. She has been through more in her short life than most people in 50 years.

Cinder & Smoke

11-29-2005, 09:17 PM

Tuesday, November 29, 2005 at 04:45 PM EST

The belly catheter is out, and Sam is doing fine;
she's been a little groggy since coming home early this afternoon, but is starting to perk up. The stitches will dissolve, and she can take a bath (a real bath!) later this week. The PICC will likely come out next month sometime; they want to wait a little while longer on that. Her labs looked fine yesterday.

Unfortunately, she missed her first Thanksgiving gathering,
as she had diarrhea, which continued several days; we've since found out it's likely due to the long-term antibiotics she's taking for the TB exposure, so she's taking lactobacillus caplets to help with that. She should be back to herself by tonight or tomorrow morning.

She was quite the character down at the hospital,
still trying to talk to everyone through the strawberry gas mask they gave her to make her sleepy.

So it's Shriner's next week, then back to the kidney docs later next month; they'll check her belly again then, to make sure it healed up okay.

Last night, our social worker came to do our 1-year post-placement visit
(the final one), and was able to finally meet Sam;
Sam really enjoyed her visit, as did we.
Thanks, Heather!! I'll update again after our Shriner's visit.

As always, thanks for your continued good thoughts;
we feel especially blessed this holiday season.

Jessica

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There will me more Thanksgiving Gatherings, Sammy;
and Christmas is Coming, too!
Happie Holidays!!